Comments on: PREDNISONE: Jagged little pill

By: Bernie

Bernie — Sun, 31 Aug 2008 13:24:02 +0000

I am 70 pretty good shape.I had a vending buisness(soda snapple candy etc.)very active. Retired april 2006, july 13 2006 I had heart surgery, bad mitral vavle.Survived the operation ok but three months later started to experience pain in joints.Now they say I have RAbeen taking prednisone for 1-1/2 years,last month iwas on 60mg a day for 4 days then 40, 20 etc. Now Iam on 5mg
aug 30 2008 i have so much joint pain its almost unbearable
I also been on Plaquinol,mexo,arava, noting helps. Don’t know what to do.

By: Mikiye Creations

Mikiye Creations — Sun, 27 Apr 2008 00:02:01 +0000

Oh man.
I am TRYING TO GET OFF Prednisone and it’s been a nightmare!
I am currently looking up info on the internet and found your post.
I have Palpable Purpera and every time I decrease my right ankle swells so much I can barely walk…it’s been almost 3 months and my body wants 20mg a day. (I’ve been trying 15-17 mg)
I didn’t know about taking the meds in the a.m. being better for our bodies… wish someone had told me this in the beginning! I have been taking it throughout the day especially in the EVENING when I seem to swell!

By: Bob Merc-The Shift

Bob Merc-The Shift — Wed, 12 Mar 2008 23:34:45 +0000

Hello all…My name is Bob and I’ve had RA for about 5 years now…it started with my left hip having to be replaced and it promptly decided to invade the rest of my joints…my ankles being the most severly affected now. I suffer from incredible pain…and my thyroid gland is underactive. What sucks is that I’m only 50 years old and I had been athletically active for my whole live. My latest malady is constant sleepiness from the prednisone I take. I think we can all agree as RA people we NEVER get what is called ” A good nights sleep” I would fling this prednisone down the street in a heartbeat but it is the only thing that seems to stop making my calves, ankles, and feet look like Coke bottles. I’m on disability and I’m pretty home-bound…I do an internet live sports-talk show from a studio in my home since August of 2005 to keep my sanity. I often wonder if I should get an internet radio show going for all of us that have this unforgiving thing called RA. I have been experiencing the most ridiculous bouts of sleepiness lately…I’m fresh and wide awake from about 6am till 9 or 10am and the rest of the day I’m constantly nodding off. I have no energy to do anything. I wonder if it it just as well to count off the preds and live with the swelling. I am back on Remicade…it’s very expensive…I’m on Medicaid and I had to take extra coverage to bridge the 20% gap to pay for it. I would gladly donate my time to set up a site where we can collectively get together to discuss our RA and to host a radio show to perhaps help us help each other…I so HATE this disease!!!! Bob Merc- spasportsshift@hotmail.com

By: S.P.

S.P. — Wed, 06 Feb 2008 18:11:02 +0000

Glad to be of help! I know I was really lost when I first was diagnosed. It is a bit surreal. Let me know if there are any other topics you would like me to cover. Thanks for reading.

By: kristy

kristy — Wed, 06 Feb 2008 12:19:03 +0000

wow.
you have really helped me so much.
i am 24 and got diagnosed just before christmas.
it is all really really new and scary to me. so, thankyou!

By: S.P.

S.P. — Mon, 28 Jan 2008 05:11:13 +0000

I totally understand what you went through! Have your doctors started you on any other medications?

By: Jolynn

Jolynn — Sat, 19 Jan 2008 21:41:22 +0000

Wow, this story is so so close to my heart. I am 25, and got diagnosed with RA when I turned 21 (on my birthday actually). I had the same experience with it at first. In fact, for the first 2 months, I actually LOST weight. Then, things turned really bad. I have had to be off and on it, in pretty large doses, in between treatments and for what is now a constant flare up. It has basically ruined my body in so many ways that I’d almost rather suffer than be on this stuff. The pictures you have on here so resemble my situation. I was tiny, happy, and balanced. After prednisone, I was swollen/puffy, confused and very up and down in my moods. I also have a wonderfully supportive man in my life, and I sometimes wonder how on earth the physical element is there. I was attractive and vibrant when we met, but shortly after, was what I call “prednisoned-out” and he’s stuck by me. So, thank you for this post. I think it’s really helpful to hear other people, especially young women, who struggle with the same thing. On a positive note- my new treatment seems to be helping a lot more now and I’m only on 5mgs a day. I can’t wait to get to 0 a day, and just use it occassionally like you said. Every time i go below 5mgs though, I flare up again, so it’s going to have to be a slow and steady process. Thanks again for sharing your story!